Monday, September 02, 2013

Onward and Upward

Hello Team:[Apolgies for formatting issues. Can't find the wherewithal to "code" and fix them.] Jeff is trucking through his final round of R-EPOCH. I looked back at some photos this evening from his initial, long stint at UCSF during his diagnosis/Round 1 back in May. Lydia was tiny. Jeff had a beard and hair. Of course, he also couldn't breathe well and all the lymphoma in his body was making him feel pretty horrible. At night when he was in the hospital alone (well, surrounded by nurses and doctors), I was so nervous about him that I texted him throughout the night and even called occasionally to check in. I hope he is sleeping better now that I am less prone to bugging him in the middle of the night. I can't say that my sleep is entirely improved - Stella is still my daughter, after all - but back then I was nursing a whole lot and was also processing so much that I was usually researching lymphoma or writing on my phone even when I didn't have to be awake to tend to Lydia. Now that things are going better, my blog posting frenzy has calmed down a bit.And, in addition to more sporadic blog postings and moderately improved sleep, four plus months later, thankfully, a lot has changed. In chief, Jeff's lymphoma is gone. I could list other changes, but that one pretty much takes the cake. I'm heading back to work soon, and trying to focus (along with Jeff) on getting through the rest of his treatment. I'm also working on adopting a new perspective about the rest of this year and next and attempting to view it as a "bonus" year for us. We get to stay in San Francisco a bit longer. Jeff can relax and recoup.

But I guess that as we prepare to "put this behind us," I am struck by how I don't believe that will ever actually happen. Even when Jeff's next PET scan (after all the chemo is done) hopefully comes back clean, there will be scans, scans, and more scans. Lymphoma is not deemed "cured" until five years of continuous clean scans. I suspect that I will be forever hypervigilant about his health and, by extension, about my own and the health condition of Lydia and Stella. With the hypervigilance I know there will be a fair degree of anxiety about relapse as well. And what strikes me as most bizarre, is that there will come a time, quite soon actually, when we will meet people who have no idea that Jeff had lymphoma. Who have no clue what we have gone through in this insane whirlwind of a year. Of course, this is true of all sorts of different, intense personal experiences - you don't just walk up to someone and say, "my husband has lymphoma" as though it is the most important thing for them to know about you. But for many months now, Jeff having (had) lymphoma has been one of the most important things to know about me. It has occupied my heart and mind so fully, maybe I just can't imagine being in a place where this experience will at least take something of a back seat.

In any event, I look forward to the R-EPOCH drugs taking off and going far, far away for good. By my count, ROCKSTAR Jeff has less than 72 hours left of their administration and when he is done there will be great cause for rejoicing in our household. It will, of course, be a bit tempered by the painful effects of the final Neulasta shot and the exhaustion brought on by the drugs, but we will par-tay in our own way. All the best to all of you. Katina